References
- Adar, T., Rodgers, L. H., Shannon, K. M., Yoshida, M., Ma, T., Mattia, A., Lauwers, G. Y., Iafrate, A. J., Hartford, N. M., Oliva, E., & Chung, D. C. (2018). Universal screening of both endometrial and colon cancers increased the detection of Lynch Syndrome. Cancer, 124(15), 3145–3153. https://doi.org/https://doi.org/10.1002/cncr.31534
- Anagnostopoulos, A., McKay, V. H., Cooper, I., Campbell, F., Greenhalgh, L., & Kirwan, J. (2017). Identifying Lynch syndrome in women presenting with endometrial carcinoma under the age of 50 years. International Journal of Gynecologic Cancer, 27(5), 931–937.
- Ayme, S., Kole, A., & Groft, S. (2008). Empowerment of patients: Lessons from the rate diseases community. The Lancet, 371(9629), 2048–2051. https://doi.org/https://doi.org/10.1016/S0140-6736(08)60875-2
- Boland, P. M., Yurgelun, M. B., & Boland, C. R. (2018). Recent progress in Lynch syndrome and other familial colorectal cancer syndromes. CA: A Cancer Journal for Clinicians, 68(3), 217–231.
- Bowel Cancer UK. (2015). Our research on variations in Lynch syndrome testing presented at leading conference. Operating Theatre Journal, 298, 10. https://otjonline.com/download/operating%20theatre%20journal%20july%202015.pdf
- Bowel Cancer UK. (2019). Bowel cancer. https://www.bowelcanceruk.org.uk/about-bowel-cancer/bowel-cancer/
- British Psychological Society. (2014). Code of human research ethics. https://www.bps.org.uk/sites/bps.org.uk/files/Policy/Policy%20-%20Files/BPS%20Code%20of%20Human%20Research%20Ethics.pdf
- Campbell-Salome, G., Buchanan, A. H., Hallquist, M., Rahm, A. K., Rocha, H., & Sturm, A. C. (2021). Uncertainty management for individuals with Lynch Syndrome: Identifying and responding to healthcare barriers. Patient eEducation and cCounseling, 104(2), 403–412. https://doi.org/https://doi.org/10.1016/j.pec.2020.07.017
- Cancer Research UK. (2018). Inherited genes and cancer types. https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/inherited-cancer-genes-and-increased-cancer-risk/inherited-genes-and-cancer-types#inherited_genes9
- Cancer Research UK. (2020). Bowel cancer survival statistics. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/bowel-cancer/survival#heading-Zero
- Corbin, J., & Strauss, A. (1985). Managing chronic illness at home: Three lines of work. Qualitative Sociology, 8(3), 224–247. https://doi.org/https://doi.org/10.1007/BF00989485
- Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. Jossey-Bass.
- Cordier, J. F. (2014). The expert patient: Towards a novel definition. The European rRespiratory jJournal, 44(4), 853–857. https://doi.org/https://doi.org/10.1183/09031936.00027414
- Delisle, V. C., Gumuchian, S. T., Rice, D. B., Levis, A. W., Kloda, L. A., Körner, A., & Thombs, B. D. (2017). Perceived benefits and factors that influence the ability to establish and maintain patient support groups in rare diseases: A scoping review. The pPatient, 10(3), 283–293.
- Dheensa, S., Lucassen, A., & Fenwick, A. (2018). Limitations and pitfalls of using family letters to communicate genetic risk: A qualitative study with patients and healthcare professionals. Journal of gGenetic cCounseling, 27(3), 689–701. https://doi.org/https://doi.org/10.1007/s10897-017-0164-x
- Dillon, J. L., Gonzalez, J. L., DeMars, L., Bloch, K. J., & Tafe, L. J. (2017). Universal screening for lynch syndrome in endometrial cancers: Frequency of germline mutations and identification of patients with lynch-like syndrome. Human pPathology, 70, 121–128. https://doi.org/https://doi.org/10.1016/j.humpath.2017.10.022
- Douma, K. F. L., Bleeker, F. E., Medendorp, N. M., Croes, E. J., & Smets, E. M. A. (2019). Information exchange between patients with Lynch syndrome and their genetic and non-genetic health professionals: Whose responsibility? Journal of cCommunity gGenetics, 10(2), 237–247. https://doi.org/https://doi.org/10.1007/s12687-018-0381-5
- Hadley, D. W., Jenkins, J. F., Steinberg, S. M., Liewehr, D., Moller, S., Martin, J. C., Calzone, K. A., Soballe, P. W., & Kirsch, I. R. (2008). Perceptions of cancer risks and predictors of colon and endometrial cancer screening in women undergoing genetic testing for Lynch syndrome. Journal of Clinical Oncology, 26(6), 948–954. https://doi.org/https://doi.org/10.1200/JCO.2007.13.0575
- Hampel, H., Frankel, W. L., Martin, E., Arnold, M., Khanduja, K., Kuebler, P., Nakagawa, H., Sotamaa, K., Prior, T. W., Westman, J., Panescu, J., Fix, D., Lockman, J., Comeras, I., & de la Chapelle, A. (2005). Screening for the Lynch syndrome (Hereditary nonpolyposis colorectal cancer). The New England jJournal of mMedicine, 352(18), 1851–1860. https://doi.org/https://doi.org/10.1056/NEJMoa043146
- Hochschild, A. R. (1979). Emotion work, feeling rules, and social structure. American Journal of Sociology, 85(3), 551–575. https://doi.org/https://doi.org/10.1086/227049
- Houwink, E. J. F., Muijtjens, A. M. M., van Teeffelen, S. R., Henneman, L., Rethans, J. J., Jacobi, F., van der Jagt, L., Stirbu, I., van Luijk, S. J., Stumpel, C. T. R. M., Meijers-Heijboer, H. E., van der Vleuten, C., Cornel, M. C., & Dinant, G. J. (2015). Effect of comprehensive oncogenetics training interventions for GPs evaluated at multiple performance levels. PLOS ONEPlos One, 10(4), e0122648. https://doi.org/https://doi.org/10.1371/journal.pone.0122648
- Hudson, N., Law, C., Culley, L., Mitchell, H., Denny, E., Norton, W., & Raine-Fenning, N. (2020). Men, chronic illness and healthwork: Accounts from male partners of women with endometriosis. Sociology of hHealth & iIllness, 42(7), 1532–1547. https://doi.org/https://doi.org/10.1111/1467-9566.13144
- Kladny, J., & Lubinski, J. (2008). Lynch syndrome (HNPCC). Hereditary cCancer in cClinical pPractice, 6(2), 99–102. https://doi.org/https://doi.org/10.1186/1897-4287-6-2-99
- Lynch, H. T., Riley, B. D., Weissman, S. M., Coronel, S. M., Kinarsky, Y., Lynch, J. F., Shaw, T. G., Rubinstein, W. S., & Weismann, S. (2004). Hereditary nonpolyposis colorectal carcinoma (HNPCC) and HNPCC‐like families: Problems in diagnosis, surveillance, and management. Cancer, 100(1), 53–64. https://doi.org/https://doi.org/10.1002/cncr.11912
- Lynch, H. T., Snyder, C. L., Shaw, T. G., Heinen, C. D., & Hitchins, M. P. (2015). Milestones of Lynch syndrome: 1895–2015. Nature rReviews. Cancer, 15(3), 181–194. https://doi.org/https://doi.org/10.1038/nrc3878
- McCann, S., MacAuley, D., Barnett, Y., Bunting, B., Bradley, A., Jeffers, L., & Morrison, P. J. (2009). Family communication, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: A qualitative study. Psycho-oncology, 18(11), 1208–1215. https://doi.org/https://doi.org/10.1007/pon.1487
- Metcalfe, A., Plumridge, G., Coad, J., Shanks, A., & Gill, P. (2011). Parents’ and children’s communication about genetic risk: A qualitative study, learning from families’ experiences. European Journal of Human Genetics, 19(6), 640–646. https://doi.org/https://doi.org/10.1038/ejhg.2010.258
- Morris, B. A., Hadley, D. W., & Koehly, L. M. (2013). The role of religious and existential wellbeing in families with Lynch syndrome: Prevention, family communication, and psychosocial adjustment. Journal of gGenetic cCounseling, 22(4), 482–491. https://doi.org/https://doi.org/10.1007/s10897-013-9571-9
- National Institute for Health and Care Excellence. (2017). Molecular testing strategies for Lynch syndrome in people with colorectal cancer. https://www.nice.org.uk/guidance/dg27/chapter/1-Recommendations
- Nebgen, D. R., Lu, K. H., Rimes, S., Keeler, E., Broaddus, R., Munsell, M. F., & Lynch, P. M. (2014). Combined colonoscopy and endometrial biopsy cancer screening results in women with Lynch syndrome. Gynecologic oOncology, 135(1), 85–89. https://doi.org/https://doi.org/10.1016/j.ygyno.2014.08.017
- Palter, V. N., Baker, N. A., Pollett, A., Daly, C., Facey, M., Rotenberg, C., Rabeneck, L., & Baxter, N. N. (2019). Learning by example: An international perspective on reflex-testing for Lynch syndrome. Annals of sSurgical oOncology, 26(2), 425–436.
- Peat, G., Rodriguez, A., & Smith, J. (2019). Interpretative phenomenological analysis applied to healthcare research. Evidence-bBased nNursing, 22(1), 7–9. https://doi.org/https://doi.org/10.1136/ebnurs-2018-103017
- Penney, K. L., Michailidou, K., Carere, D. A., Zhang, C., Pierce, B., Lindström, S., & Kraft, P. (2017). Genetic epidemiology of cancer. In M. J. Thun, M. S. Linet, J. R. Cerhan, C. Haiman, & D. Schottenfeld (Ed.), Cancer epidemiology and prevention. (4th ed., pp. 53–76). Oxford University Press. https://doi.org/https://doi.org/10.1093/oso/9780190238667.003.0005
- Petersen, J., Koptiuch, C., Wu, Y. P., Mooney, R., Elrick, A., Szczotka, K., Keener, M., Pappas, L., Kanth, P., Soisson, A., Kohlmann, W., & Kaphingst, K. A. (2018). Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis. Patient eEducation and cCounseling, 101(11), 2011–2017. https://doi.org/https://doi.org/10.1016/j.pec.2018.07.021
- Rowland, E., & Metcalfe, A. (2013). Communicating inherited genetic risk between parent and children: A meta-thematic analysis. International Journal of Nursing Studies, 50(6), 870–880. https://doi.org/https://doi.org/10.1016/j.ijnurstu.2012.09.002
- Ryan, N., Wall, J., Crosbie, E. J., Arends, M., Bosse, T., Arif, S., Faruqi, A., Frayling, I., Ganesan, R., Hock, Y. L., McMahon, R., Manchanda, R., McCluggage, W. G., Mukonoweshuro, P., van Schalkwyk, G., Side, L., Smith, J. H., Tanchel, B., Evans, D. G., Gilks, C. B., & Singh, N. (2019). Lynch syndrome screening in gynecological cancers: Results of an international survey with recommendations for uniform reporting terminology for mismatch repair immunohistochemistry results. Histopathology, 75(6), 813–824. https://doi.org/https://doi.org/10.1111/his.13925
- Schneider, J. L., Goddard, K. A. B., Muessig, K. R., Davis, J. V., Rope, A. F., Hunter, J. E., Peterson, S. K., Acheson, L. S., Syngal, S., Wiesner, G. L., & Reiss, J. A. (2018). Patient and provider perspectives on adherence to and care coordination of Lynch syndrome surveillance recommendations: Findings from qualitative interviews. Hereditary cCancer in cClinical pPractice, 16(1), 11. https://doi.org/http://doi.org/10.1186/s13053-018-0090-4
- Seear, K. (2009). Nobody really knows what it is or how to treat it’: Why women with endometriosis do not comply with healthcare advice. Health, Risk & Society, 11(4), 367–385. https://doi.org/https://doi.org/10.1080/13698570903013649
- Sehgal, R., Sheahan, K., O’Connell, P. R., Hanly, A. M., Martin, S. T., & Winter, D. C. (2014). Lynch syndrome: An updated review. Genes, 5(3), 497–507.
- Smith, J. A. (2017). Interpretative phenomenological analysis: Getting at lived experience. The Journal of Positive Psychology, 12(3), 303–304. https://doi.org/https://doi.org/10.1080/17439760.2016.1262622
- Smith, J. A., & Osborn, M. (2015). Interpretative phenomenological analysis. In J. A. Smith, (Ed.), Qualitative Psychology: A practical guide to research methods. (3rd ed., pp. 25–52). SAGE.
- Smith, J. A., Larkin, M. H., & Flowers, P. (2022). Interpretative phenomenological analysis: Theory, method and research. (2nd ed.). SAGE.
- Smith, S., Foy, R., McGowan, J., Kobayashi, L., Burn, J., Brown, K., Side, L., & Cuzick, J. (2017). General practitioner attitudes towards prescribing aspirin to carriers of Lynch syndrome: Findings from a national survey. Familial cCancer, 16(4), 509–516. https://doi.org/https://doi.org/10.1007/s10689-017-9986-9
- Steel, E., Robbins, A., Jenkins, M., Flander, L., Gaff, C., & Keogh, L. (2017). How does genetic risk information for Lynch syndrome translate to risk management behaviours? Hereditary cCancer in cClinical pPractice, 15(1), 1. https://doi.org/http://doi.org/10.1186/s13053-016-0061-6
- Stoffel, E. M., & Walsh, C. (2013). Chemoprevention of endometrial cancer in Lynch syndrome: A step forward. Cancer pPrevention rResearch (Philadelphia, Pa.), 6(8), 755–759.
- Tan, Y. Y., & Fitzgerald, L. J. (2014). Barriers and motivators for referral of patients with suspected Lynch Syndrome to cancer genetic services: A qualitative study. Journal of pPersonalized mMedicine, 4(1), 20–34. https://doi.org/https://doi.org/10.3390/jpm4010020
- Tzortzatos, G., Andersson, E., Soller, M., Askmalm, M. S., Zagoras, T., Georgii-Hemming, P., Lindblom, A., Tham, E., & Mints, M. (2015). The gynecological surveillance of women with Lynch syndrome in Sweden. Gynecologic oOncology, 138(3), 717–722. https://doi.org/https://doi.org/10.1016/j.ygyno.2015.07.016
- Ward, R. L., Hicks, S., & Hawkins, N. J. (2013). Population-based molecular screening for Lynch syndrome: Implications for personalized medicine. Journal of Clinical Oncology, 31(20), 2554–2562. https://doi.org/https://doi.org/10.1200/JCO.2012.46.8454
- Warner, N. Z., Gleeson, C., Fahey, P., Horgan, R., & Groarke, A. (2022). Experiences of living with Lynch Syndrome: A reflexive thematic analysis. European jJournal of oOncology nNursing : The oOfficial jJournal of European Oncology Nursing Society, 58, 102117. Advance online publication https://doi.org/https://doi.org/10.1016/j.ejon.2022.102117
- World Health Organization. (2018). Cancer. https://www.who.int/health-topics/cancer#tab=tab_1